In this language we make such a fuss of four letter words. Perhaps that’s why swearing is associated with limited vocabulary, we learn three-letter words from Peter and Jane along the lines of cat and dog and mat and then we graduate to four letters. Some people stick there. Despite the bad press of four letter combinations, there are worse things, smaller, fewer letters. There are just two little letters in my life, just two little ones, that make such a difference, that have changed such a lot. It’s a slightly ironic pairing, you’ll have to admit, when you find out that my dread enemy is ME. Just two little letters, they mean so much by their effects and yet mean so little to so many people.
I’ve tried not talking about it, I’ve tried being ‘strong’ and I’ve tried ignoring it. ME is still with me. Just two little letters but they follow me around like some mangy flea ridden mongrel, not exactly my choicest companion and not exactly welcomed by others either. Now I have a stick it has become a little more obvious that I am being followed, a bit like Paddington leaving the bacon in his suitcase. My stick is my bacon (vegetarian of course) and people want to know why it’s hanging around. Maybe it’s the smell.
So I have to ‘fess up. Sometimes I’m a little embarrassed, other times I even feel a little guilty because I know that so many of the people around me have real, genuine problems. And ME? Those two little letters? Well it may be a real condition but most folks don’t believe in it, especially those who pride themselves on their expert status.
It’s just two little letters and it doesn’t mean much to people. I get the polite ‘oh’ of acknowledgement but I don’t know whether to take it further. Are people interested in knowing more about my enemy, ME? And what would I say? I don’t know, I know it’s real because I live with it and if I had a choice, I could be doing a lot more with my life.
Other times people suddenly look highly sympathetic (strangely it’s a similar tone to that of uttering condolences in some tragic circumstance). I get a little suspicious when I get that reaction. I know which two letters I’m talking about, other people don’t. They nod knowingly and may say something about the condition or things that they’ve heard, mention a friend we both have in common who has the disease. I know then that they’re talking about something very different. They’re just a letter out but it makes a big difference.
I don’t have MS. Everyone knows about MS. MS is socially and medically acceptable, a worthy cause for sympathy.
I have to shake my head and tactfully explain that I have ME, two other little letters which still have a huge impact on my life. Just not in a way that anyone seems to understand or appreciate. I try to explain but I don’t have a polite off-pat introduction for my mongrel friend of two little letters.
Apparently I’m meant to be envious of those who have that other two letter disease. If envious is wishing myself in their situation then I’m not. I wouldn’t wish MS on anyone and I’m too busy dealing with ME, two other little letters which are a life sentence, myself. Perhaps at times it is easy to be envious of the position of MS sufferers, of their status in society. But that’s not really something I do think about anyway, I certainly wouldn’t dwell on it. My two little letters keep me busy elsewhere, trying to just do the basic everyday things. However personally, I think it would be a lot easier if MS was the two letter friend that I had to introduce. It would be quicker too and I think that I’d probably get a lot more understanding and support, which does make me sound like a very pathetic, attention-seeking loser. I’m not looking for sympathy though, I’d just appreciate it at times if there was a little bit more understanding of the beast that is my two letter friend.
It’s hard going about with a stick, it is a mark of shame when I think of all the problems that my friends and acquaintances are struggling with. Who am I to complain? There are people who I’ve known all my life that I’m now being forced to explain that I have ME and that it’s no new thing. Half my life, you would have thought the bacon would have decomposed by now but no, still got my faithful mongrel-beast following me around and lowering the tone.
I was with my mother the other day when we bumped into one of her friends. Who has of course known me since childhood. Everyone assumes injury at first, I’m not quite sure of the logic of such conclusions but who am I to regulate the logic of the human mind. She asked of course about the stick after which ensued a conversation much like all the others related above. I ended up saying that I had had those two little letters ME in my life since I was a teenager. (I was tired, a gleeful, impish, trouble-stirring streak had taken over). She, perhaps quite rightly too, then demanded why nothing had ever been said about it before. My mother, already embarrassed by the stick-wielding, hat-wearing idiosyncrasy who was accompanying her but that she still persists in being related to, was slowly sinking into the floor and manage to stammer out ‘well it’s not the kind of thing you talk about’. I am a guilty secret. Because of two little letters. It is a particularly malodorous mongrel, the kind that not even a tramp would welcome at his heels. Just as well Depression doesn’t take to needing a stick was my final thought on that conversation.
ME is something that I learnt to hide but it still surfaces. And when it needs a stick there is no escaping. I am out. But I still don’t know how to explain my mongrel friend.
I have been reading some new information of ME and am still struggling to process it. But there’s a very interesting chart about the whole MS v ME thing which is either illuminating or scary, I haven’t yet decided. And if anyone reading this has an off-pat introduction for my two lettered mongrel-beast then please share!